Tendons and Fluoroquinolones
I truly wish I could stop the endless suffering of women damaged by mesh implants but I have learned over six years that when you are down, doctors will keep doing things that will take you past a point of no return. I know so many women who have had surgeries for tendon and joint repairs and I know a good part of it is the amount of these drugs they have taken over years of mesh complications, for infections. I know that women believe that it is ‘their’ body causing this or it is part of their genetics, but we should all stop blaming ourselves for what has happened to us and keeps happening because of prescription drugs and implants.
I know many women think they can’t do without a certain drug because of their health, because they fear the unknown. It takes a very strong willed person to say “NO” to a doctor when he/she pulls out a pad to write up a prescription. After all we have been trained well. However I have said no on numerous occasions because I have experienced the results of a bad drug reactions and still live with a major bad reaction to Gentamicin. I can’t change what happened to me, but I can yell loud and clear to change what happens to other women.
There is a Facebook page for the devastating results of fluoroquinolones and I have clicked like on it, but never saw this new warning roll through because these days I am reading a lot and learning more about what happens to us because of mesh implants, to share with women. It was pure coincidence that I have been reading up everything about the FDA and how it works, when I clicked on something and it took me to the new warning about these drugs. I was amazed that they finally made a change as to the warnings of these drugs, because they have had black box warnings on them for a long time.
In 2008, my daughter Kim and I were working together on our house and we were working hard, doing everything to what was at that time a partial shell of a house. We had big plans and were excited for our future. When my husband died in 2004, the house was mostly a shell, except Kim had stayed out here getting the first basic electricity in the shell in one area of the house and had managed to add a few walls. My husband had worsened at that time so I could not help her, but she had a cell phone and called me to check in so I would know she was okay. It was really hard to not be with her, but I could not leave my husband.
My daughter is an extremely smart young woman, just like her Dad was. She has many abilities and she works hard to keep things going around our home. She reads books, watches YouTube and figures things out on her own, that few women would even attempt to do. But to have a future, sometimes you have to decide if you want to take loans and ransom your life, or you do the work yourself. My husband and I chose the latter and Kim grew up watching her Mom and Dad work hard. So she too chose this same path. Now her path is trying to do things on her own to give us a better life and she can be here with me. Because I have many problems, my doctor said I should not be alone in case I fell.
I have refused all kinds of drugs and I can tell you I am healthier these days, even though I can’t change what has happened in the past, I have learned how to navigate life without falling, even though the results of the gentamicin antibiotic has never gone away. I have taught myself to deal with it all and to be as happy as I can possibly be. That is my wish for all mesh injured women.
But now I want to share with you what these drugs can do.
Back in 2008, Kim had something which they thought could have been caused by an infection. It turned out there was nothing to worry about. So the doctor decided to give her generic Cipro just in case there was an infection. She was to take one morning and one at night. She was okay at first, but then told me something was not right because her tendons in her legs were hurting badly. She had taken eleven pills in five days and she was struggling to read on the Internet to find a cause of the pain. Like everyone, at first she thought it was the work she had done before taking the drug. She finally found the cause. It was CIPRO. She stopped taking it immediately but she was in so much pain and could not sleep. Not only that but she could not walk. She instead rolled herself around on an office chair to get to the bathroom. Yes I was extremely scared.
Regardless, Kim would try to research to find out what she could do to come back from this. She found others like her and they were also trying everything. She found out some had found relief by going to an alternative doctor and doing a special therapy. He was Dr. Manso in Houston. This is what is on his site at the present time.
Chelation Therapy. Posted on October 24th 2008
We have successfully given hundreds of these treatments without any complication and with very encouraging results. We use computerized formulas to determine doses and ingredients, and use the most conservative ACAM protocols. We usually drip the I.V. over a 2 hour period.
During chelation (key-LAY-shun) therapy, you recline comfortably in a lounge chair for approximately one hour while an intravenous solution slowly trickles into your bloodstream. In the meantime, you can nap, talk, read, or play on your phone. Any discomfort or pain is unlikely.
The intravenous solution includes a chelating agent — usually a synthetic amino acid called ethyl-enediaminetetraacetic acid (EDTA) — along with various vitamins and minerals. The EDTA seeks out toxic metals within your body, such as lead, cadmium, aluminum, and mercury. It also finds certain minerals such as calcium, the “glue” in artery plaque. EDTA then wraps itself around these substances and pulls them out of your body via your kidneys. Good minerals may also be wasted, so caution is needed.
Chelation therapy is not accepted by mainstream medical entities and disliked by the medical boards, etc. We make no claims as to the effectiveness and mainly give it to people who request it and have had prior positive experience with it.
It was not inexpensive but Kim was suffering so much and she said she wanted to try it. I did not have the mesh implant until March 2010, so I was driving. So I drove her there and it took about an hour. When we got outside after the I.V treatment, she said it was not a cure, but it gave her hope because she felt so much better. We could not afford for her to continue to go for this treatment so it was a onetime thing.
So when we came home she began researching to find out what supplements she could use to bring herself back to normal. Many supplements that could help, she found were to do with the nervous system and she found write-ups on sites for diabetes. She began taking R-Lipoic Acid, Benfotiamine and other supplements including a lot of chelated magnesium. It was slow to get better, but steadily she began to improve. However walking was still painful so she researched to find shoe insoles that could help. To this day she cannot wear shoes without them.
The damage never left, but what she does helps her continue living and working on our house. Without continuous supplements, she would not be doing any of this. So if you are reading his, please, please look at supplements and even though they will cost money, they are worth it.
Now to help you understand and learn more I found a site where another woman had gone through this and I am giving you what she said. In the past, I have written about the importance of magnesium for mesh injured women, because it can really help stabilize your condition along with other things. You can have your magnesium levels checked by a doctor. This aritcle will also tell you what Kim went through. She stopped taking Cipro by herself and had left numerous messages for the doctor. None were answered until three days later and the doctor did not believe her. She never went back to the woman again.
Cipro & Magnesium
“FLOXED” BY CIPRO? MAGNESIUM MIGHT BE THE ANSWER
As if having the connective tissue disorders Ehlers-Danlos Syndrome and Fibromyalgia weren’t bad enough, I found myself one night, with welling eyes of tears, realizing I had just been “floxed.” My initial thought was, “There’s actual terminology for this? This can’t be good.”
Just a few days prior I was written a prescription for the antibiotic Ciprofloxacin, usually referred to as Cipro, from the class of medications known as fluoroquinolones. A sense of urgency to get the prescription filled my determination. Not having taken antibiotics since my childhood, I didn’t quite realize what I was in for, neither did I think to do any research on the matter. Honestly, I was thinking, “Thank god I live in a time of antibiotics!”
I’m one of the “lucky” Cipro cases. Wednesday morning I received a call from my doctor to stop taking the Cirpo. He explained that I didn’t have an infection and that the medication was not needed. Having taken one pill on Monday and three on Tuesday, he instructed me to finish out the day by taking two more. Even as I took that last pill, I had a gut feeling that I shouldn’t.
Within days of taking the medication, I noticed that the tendons in my fingers and hands were aching: a wicked feeling that I had never felt before. “Was I typing too much yesterday? But my hands have never felt like this. I can feel every aspect of each tendon.”
As the hours rolled on, my body began to ache worse than any Fibromyalgia pain that had ever plagued me. Near my shoulder blade, I felt a sharp stabbing pain. As I attempted to walk, I experienced leg cramps. In my mind, I went from my usual sunny disposition to a severe depression with a doll-like stare over my eyes. My stomach had an ache that lasted for days.
If there is any one positive thing that the world of E.D.S. has, it’s the network of tips, assurance and guidance from others. Immediately I found myself in an E.D.S. support group asking if anyone ever had problems with taking Cipro. Honestly, I was googling Cipro & Gluten, thinking I was having an allergic reaction. Within moments, someone answered back using the term “floxed”. Apparently, there have been thousands of people, even those without EDS, which have reacted horribly to Cipro.
My anger was directed at my doctor for prescribing this medication to someone with Ehlers-Danlos Syndrome and Fibromyalgia. As I spoke with him on the phone, he explained that neither of the two conditions were “contraindications.” I realized that I should not be angry at him, and it was my own fault for not researching this chemical I was introducing into my body.
Day by day, my symptoms were worsening, and it had been days since I even took the damned drug. The tendon coming up from my Achilles heel shocked me with intense pain whenever I took my dog for a walk. Shuffling substituted for walking, as I was afraid I would become one of the many I had just read about that had their tendons rupture. The all-over pain I was experiencing graduated into severe pain with muscle spasms, and my depression was not disappearing. A full week after my last dose of Cipro, I had to stop myself, four times, from crying during my car ride home. I felt as if I could no longer drive anymore. The walls were closing in.
As I researched, I came across numerous accounts of people being crippled from Cipro, with these horrible symptoms lasting anywhere between one and two years. The stories are sad, for the victims and their families, alike.
The more I researched and reached out, the more I was piecing together. One fellow EDSer mentioned something about a fluoroquinolone inhibiting a particular vitamin. In my findings, comments about magnesium deficiency kept catching my eye. For years, many people with EDS have complained of being deficient in magnesium; myself included. The following day, another fellow EDSer reached out and commented about a possible link with Cipro affecting those deficient in magnesium.
Within moments of searching online, I found two accounts of people turning almost completely around with the help of topical magnesium. Springing from my chair, for the first time in a week, I went to the cabinet and pulled out a bottle of magnesium cream I had almost forgotten about. Applying this cream to multiple thin-skinned areas of my body, two to three times a day for two weeks, I desperately hoped this would relieve some of my symptoms. Expecting my recovery to take anywhere between 10-14 days, I was elated when I woke up on the second day as if nothing had ever happened. The nightmare was over!
Attributing my quick recovery to my short duration of taking the medication, I realized I am one of the lucky ones. I escaped, but many others still suffer or still have the prospect of also falling victim to this horror.
With a sensitive nervous system as well as having the possibility of being deficient in magnesium, many people with Ehlers-Danlos Syndrome and Fibromyalgia may want to ask their doctor for an antibiotic that is not in the fluoroquinolone family. My doctor recommended that I call all of my doctor’s offices and pharmacies to have them document that I react to fluoroquinolones, to avoid the fluoroquinolones Cipro & Levaquin, and to try either Bactrim or Keflex the next time an antibiotic is needed.
With my research and questioning, I came across numerous EDSers that were affected by Cipro and Levaquin; however, I also came across a few people that were not affected by these medications. Searching more, I read how some people were affected after they took these medications for a second or third time. With a little searching yourself, you’ll come across countless stories of people actually contributing their Fibromylagia to fluoroquinolone toxicity!
It seems as if a fluoroquinolones affects mitochondrial DNA content and behavior. The mitochondria is involved with cellular calcium signaling. Magnesium acts as an antagonist to the calcium channel therefore possibly reversing any damage from the fluoroquinolones.
If you have been affected by taking these antibiotics and have not suffered liver damage, I personally and strongly believe that a topical magnesium treatment may be your best medicine toward recovery. The vitamin is able to instantly absorb into your bloodstream, bypassing your first phase of metabolism (not to mention your possible decreased ability to efficiently absorb nutrients through your gluten-damaged gut). Please note, that if you have liver damage from taking a fluoroquinolone, you may have trouble with supplementation, as there are some cases of people being hospitalized from magnesium treatments. Please take the supplementation with supervision and precaution. This would also be a good time to mention the importance of taking a probiotic to protect your digestive tract anytime you are taking an antibiotic. Probiotics do not decrease the efficacy of the antibiotics, but they do help replace the essential “good bacteria” in your gut which are indiscriminately destroyed along with the harmful ones by antibiotics.
Fluoroquinolones are very strong medications, as they are sometimes referred to as “the nuclear bombs of antibiotics.” If you have a known similar connective tissue disorder and you find yourself in the situation of having to take an antibiotic, know the risks and talk to your doctor about other options. If your infection is not in need of a medicinal Hiroshima, then taking the safer route may save you and your loved ones a great deal of unnecessary pain.
It seems life often takes a huge hit at you when you are down. At the same time Kim was trying to get through this, the tank of our water well blew the membrane so she was researching on line to find another and we had to go into Houston to pick it up. Then all alone, she had to replace it and get the water back on again. I wish I could have helped her but I had no clue what to do to help.
I am sharing this photo of Kim to show you what bad shape she was in after taking eleven pills of Cipro. This was August 2008 and to get out of bed, she used an office chair to move around. My husband had bought a unique walking stick when we lived overseas and she used it to stand up. She told me sleep was next to impossible because she felt her legs felt like were in an earthquake. I could not see anything move on the outside but she felt it inside.
She struggled in pain and had to sit a lot of the time on a garden stool to replace the tank. When Kim got the new tank hooked up, I took this photo. She was in agony the entire time, but we did not have the money to hire someone to do this, so she hung in and got the water back on. To add insult to injury, while she was going through this a hurricane came through. That is why the grass is so high. She could not do anything about the grass because everything was soggy and neither could I. Fortunately all the damage we had to the house was a bit to some of the guttering and our electricity was only off six hours. In Houston some areas were off for as much as three weeks during that time.
So now you know why I am giving you a heads up on what can happen when you take certain antibiotics. I watched her go through this and when she had a tag made to carry saying ‘No fluoroquinolones Ever’ to carry on her person at all times, she had one made for me and also other drugs that I did have terrible reactions to. They hang on a chain in my purse at all time. So you may want to consider doing this. I hope I have saved a few women from going through this hell by writing this blog.